Penny, the baby girl

A blog about my daughter growing up and facing the joys and challenges of growing up with Down syndrome and Tetralogy of Fallot while enjoying the love of a rough older brother. (Look how purple her feet were before her heart repair.)

Friday, May 28, 2010

Three years ago today, it was Memorial Day 2007. I opted to stay inside and rest while my husband and my son went off to spend the day with Scott's family. I know they swam in the pool and had lots of fun. Around 11 am, I got an itch to organize everything. I cleaned out the cabinets under all the sinks. I emptied out the linen closet (something that hadn't been done in the three years we lived here); then organized the items back in. Around 2 pm I started feeling hungry and I was tired of cleaning so I went to my mother's house where she was also hosting a BBQ.

Ah, my last day of being a mother to 1 and I didn't even spend it with my son. After a few hours with my family I decided to clear out. I still had a couple of small items that I wanted to have ready in my bag in case the D-day came so I swung by Stop and Shop. Oh, how happy I was, strolling down the aisles thinking about how my new baby would be. I didn't even know if I was having a girl or a boy.

Once I was home, I relaxed, checked my bag again. Then, at about 9 pm, I started to feel what I thought were contractions. Don't ask me why, but I thought to myself, "oh boy I better eat before this gets serious because who knows when I will eat again, and anyway, this might not really be labor." So I reheated myself some turkey meatloaf and cauliflower. I tried to rest, but the contractions were nagging me and I couldn't get back to sleep. At midnight, I called my ob/gyn's office, I was asked to call back when the contractions were closer together. At 2 am, they were closer together, so I called again. I was instructed to go ahead and meet them at Manchester Hospital. Before Scott and I got our stuff and our son together, it was almost 3 am! We were almost to the hospital when we realized that we forgot the digital camera, so I made Scott turn around. I continued to moan and cry out, and my sweet 4 year old son asked me to "stop making so much noise." I love him!

We dropped Nathaniel off with my mother (2 blocks from the hospital literally, so it made more sense to bring him to her) and we went to meet our new child. During my entrance exam at 3:30 am, I was told I was 6 cm and I was quickly assigned a room. By 5 am I was ready to push!

Our child was not born until almost 7 am due to the fact that I think she was coming down face up instead of face down. The back pain was pretty much unbearable and I couldn't find a position that seemed helpful. You see, I opted against an epidural for both my children. But finally she came and a sweet child was put on my belly.

Those eyes and that small mouth instantly revealed her secrets. I didn't even know if I had a boy or girl and someone reminded me to check between her legs and announce the news. It felt like I was going through trained motions, but I knew there was some devastating news to share, and I just couldn't. I just couldn't bring Scott down. And what would he think of me if I had been wrong? So, I quietly said, "Look, she's a girl." There was no excitement in my voice, no overwhelming joy like I had for my first born. My first born. . . I thought back to when I had him and how the first thing I did was kiss some slimy stranger newborn all over his head and tell him how much I loved him. I tried to do the same thing for my daughter. I kissed her once, and I told her I loved her, but I know it didn't sound convincing.

Soon, before we had even named her, some nurse told us that it seems our daughter might have Down syndrome. No one would know for sure until the results of a blood test came back, but the nurse felt pretty confident of her diagnosis. Scott and I stared at each other. We asked to hold her some more. We were reminded that a name might be appropriate. Scott told the nurses the name that we had planned. It seemed wrong, we had planned that name for a different baby, but it was the only girl name we agreed on, so this new baby was then named Penelope Ringrose.

I focused on doing the motherly things I was supposed to, so the next thing to cross off my list was breastfeeding. Scott and I seem to remember that she latched on pretty well. I nursed on both sides and then cuddled with her until a nurse asked to take her back so they could look her over again.

A couple of hours later a neonatologist walked in and told us that our newborn had some serious cardiac problems because she was unable to sustain her blood oxygen levels. I truly thought that the next words out of his mouth was going to be "We did everything we could, but she is gone." I choked back tears waiting for bad news, but instead, I learned that she was being sustained and that she would need to be transferred to Hartford where she would get a better look and possibly a surgery very soon if needed.

At noon, when she was only five hours old, a team from UConn, took my daughter away to transport her to Hartford Hospital/CCMC's NICU. Scott followed them and I was left alone. I tried to sleep, and I may have for a little bit. It was hard and I was depressed. I could hear the other babies crying for their mothers through the hallway, but I didn't have my baby. I ended up getting discharged at 7 pm, after the nurses made me eat a filling dinner. It was so crazy to think that I was only twelve hours postpartum and I was going across two towns to see my new girl.

Scott picked me up and drove me to Hartford to check everything out. It was so surreal. I was tired, my eyes were puffy from all the crying I did, and I didn't have any clothes that fit me. I also didn't have my baby with me. I will never forget that first trip to the fifth floor, it was dark and quiet on the floor so that the babies could sleep. I scrubbed in and met some professionals. I finally saw my daughter on her warming tray. She was bright red and she looked so irritated. She kept squeezing her already puffy eyes shut and sometimes that made her eyelids flip inside out. Every few moments she would have a sad trembling lip and attempt to cry a little. She seemed like such a stranger, but my heart really did go out to her. What an awful way to start your birthday! I thought.

Well, it really didn't take long for me to fall in love with her. It especially helped when I was allowed to hold her again and also, try to nurse her again when she was ten days old. She ended up having surgery when she was 6 days old to correct a heart defect and she recovered so well. Instead of asking, why me? Why was a burdened with a disabled child? I wonder why I was blessed with such a perfect being. I truly feel so lucky to have been blessed with her.

HAPPY BIRTHDAY MY LITTLE PRINCESS. I know that this year is going to be incredible for you. School will be a challenge, but you will overcome and exceed everyone's expectations!! I love you!

Thursday, May 6, 2010

You may remember back in January of 2009 that I took my GRE's because I was considering going back to school to get a Masters. Well, I have been a busy girl since I disappeared last October. I applied to UConn graduate school. Their West Hartford campus offers a one year accerated teachers program that will award me with my Masters as well as my teacher's certification in one year. You can click here if you are interested in the program details. My first summer course begins on June 1st and I am going crazy with stress.

Today, I received notice that I also was awarded a teaching grant for $15,000!!! That amount will go along way to paying off the bill for tuition. I'm so so excited. In the Fall of 2011 I will be teaching high school math baby!

Tuesday, May 4, 2010

Penny had her first visit to school today. As I said in a previous post, there are about twelve classes in this preschool; we went and visited Mrs. G's class. There were seventeen typical kids, some are three and some are four. Their day starts at 8:30 but since Penny was just checking it out, she was asked to come in at 9:45, enough time to sit through circle time and check out centers.

We walked through the door and Penny went running to the circle rug where everyone else was. Of course she didn't want to sit; she wanted to check everyone out and touch everyone's hair. :( I took her by the arm and sat with her. I also pointed around the rug and mentioned that everyone else was sitting there listening. Mrs. G read a book and her children sat there motionless. I was impressed. When the story was over, Mrs. G organized centers time by way of each child, one at a time, grabbed their name card (a foam rectangle with their name on the front and Velcro on the back) and walked over to whichever center they wanted to play with and put their name on that sign. Mrs. G saw the expression on my face and had to explain that they had been working on this since the fall and some of those kids were with her as 3-year olds, so they have been doing it for two years. Penny witnessed a couple other children hug th- teacher, so she ran into line to get one too. :) Mrs. G gladly hugged Penny back.

Two cute girls (one was named Heavenly) inducted Penny into the world of centers. Each one took a hand of Penny's and then escorted her to the play-home. There was a desk with a phone and a pad of paper to take messages, a couch, dolls, a crib, a play sink and many other fun things. Penny set to sweeping the floor right away. Then she moved onto the construction center where she played cars and blocks with a couple of boys. Some cutie named Bryce took her by the hand later on to show her the writing/literacy center. I gave Penny a bucket of magnetic letters and she took to naming them as she pulled them out one by one. There was also a puzzle center and sensory table and Penny tried them all out. She was a little destructive in that she wanted to take everything out without putting the previous thing back, but she tried when directed. She also took a crayon and colored on some one's project before I could act. The four year old girl was kind of upset, but Mrs. G smoothed it over.

After centers we went outside where she really fell short. There were tricycles, little tyke cars, scooters, and sidewalk chalk. There were a couple of playscapes so I imagine the outside areas are rotated since they spent their time on the blacktop today. She was chasing after a girl with a wagon when she fell and hurt her knees. She was already kind of miserable that day since she was constipated and tired (I think she woke up at 5:30). I decided to leave from there and so I said goodbye to the para. Mrs. G was inside taking care of some other business.

I discussed our experience with Scott. I am really nervous about Penny fitting in. I know that she is great and that the teachers will love her, but I dread the looks and laughs from the other kids. I know the kids are young now so it will be truly innocent, but already, I had 4 or so kids ask me why she can't sit in a chair or why she doesn't know how to play with something. My answer generally was that she was still only two years old. Oh how staggering the difference is between her and the typical three-year-olds. I don't compare too much, most of the time I really don't care that she is on her own time table, but when it is thrown in my face like that it is really really hard not to think about it for at least a minute. . .

I'm really excited that Penny is going to be in a typical class and not the class where it is half and half. I tell myself it is the best thing for her and that she will excel, but part of me worries that school will be too hard or because she won't be able to keep up, the disparity will be that much more significant. I can't help but worry, I am her mom.

Friday, April 30, 2010

Yesterday was my introduction into the world of PPTs. Well, it may be more accurate to say that my first PPT took place last month when I bravely sat down to a table with five of them and one of me. This was a meeting to discuss whether or not she qualified for services. Since I wasn't worried about the outcome, I didn't bother with reinforcements. At 9:15 am yesterday, my husband and I walked toward a rather large table with almost a dozen educators. I hate to paint a portrait of "sides" as I know we are all on Penny's side, but I have heard enough horror stories to know that sometimes there can be a "them against us" mentality. The people that had my back were Scott and Penny's Birth to Three providers. Penny's occupational therapist is herself a parent advocate and is very knowledgeable in how these proceedings should go. I also have the unfathomable support of Penny's physical therapist. Her attendance at the meeting felt like a wall holding me up. Penny's speech therapist and service coordinator/sped teacher were also present, and each had a chance to speak to Penny's strengths and then go on to discuss her needs in the preschool class.

On the other side of the table were the "NEW" teachers, too numerous to mention. I remember 3 sped teachers from various classrooms, a PT, an OT, and an ST, but I also seem to remember one or two that I can't even remember what their function was. Everyone was nice enough. One of the new teachers (the OT maybe) asked if we had a picture to share before they could get going so that they could have a visual image of her before we discussed her placements. Scott happily passed his I-phone around the table to the sounds of oohs and aahs at his beautiful little princess. Scott and I had typed out a page describing what kind of person Penny is and I happily passed out copies around the table. I had indicated that I wanted a copy of this added to the IEP (individualized education plan) because Scott and I also included some goals of our own in there. The personality summary that I passed out was met with warm reception and I was really happy that Scott and I took the time to do that. It focused somewhat on her sign language skills and that our hope, no, our requirement for her would be that she be placed with a para that can sign and understand her signs.

We had a lot of ground to cover in this session. The objectives on the table were really threefold. Penny is turning 3 at the end of May, so that means she will need services or school in June until the end of the school year. She also qualified for summer school (or EYS, extended year services) and we needed to discuss how that would be organized. Lastly, we had to decide her placement for preschool next school year. There are many options in East Hartford, but until recently, I was made to feel that many did not apply to my Penny.

Since I cannot be flexible as far as driving her there and back for individual services at school (since I will be going to school myself), we had to arrange her services in June in tandem with the bussing schedule. We worked out that Penny will go to school starting May 27 for four Thursdays. I will be able to drop her off at the school at 8:15 and then she will get her ST, PT, OT, and special ed classes back to back. The bus will arrive at the school at 10:30 to bring her across town to the daycare we have chosen for her. Scott and I feel she can handle two hours at this time, and it is not a reduction in services since she is getting ST once a week now anyway. I almost cried when I realized that I WILL be able to see her go to school on her first day and see her when when comes off the bus. School starts on June 1 for me and I thought that she wouldn't start until that week as well and I had already resigned myself to the idea that I would miss her first day.

I have to be honest here and say I was not too happy with the summer school situation. The only summer school they have available are with children with severe, significant delays. As soon as I heard that I said out loud, "Then that is not appropriate for my Penny." On paper, she will attend summer school, but what we will do is find out when and where the ST time slots are and go in for that only. ESY is not about gaining new knowledge, it is about avoiding regression. She will be fine without OT and PT for the summer, but I am worried about any speech skills she may lose.

Now comes the fun part: next school year!! Determining how long her day will be, how many days, what classroom has been a moving target with this school. There are twelve classrooms in this school, some integrated, some with only typical kids, some with very severely delayed children. . . Initially I was told she was going to go into a class with only special needs kids. Even though they know it is against the law, that was the way they were doing it. Then I found out that the afternoon Head Start Program through East Hartford is a fully integrated class that she would be eligible for. There are 18 spots and they fill 10 of them with typical kids and the other eight spots are for students with IEPs. At first I was told it was from 12noon to 2:30 (which is an awful time), but later I found out that if she was picked up, we can get her at 3:30. Scheduling wise, it is much more convenient to pick her up at 3:30 then it would be to be home for the bus at 2:40 and we didn't want to pay for before and after care, so we elected for the no bussing for the way home. I was aware that there was a full day program, but that is only for typically developing kids whose parents are under certain income requirements. Technically, the half day program's typical kids are from lower income families as well. Yesterday, one of the administrators said, "You know what, since the mom will be in school full time, why don't we put Penny in the full day program." I was like, YES!! That was want I wanted, but had been denied because "we make too much money." But this woman made it seem like it would be possible. We ended up getting 1 hour each of OT and PT a week (or maybe 30min) but there is also classroom time for these therapists so Penny will in fact be getting more. We agreed on 90 minute of ST where she will be pulled out once every other week for 30 minutes to work on some skills one on one. Additionally, she will get a couple of hours of special ed instruction to work on cognitive skills along side the integrated class.

Once I get a copy of the PPT I will see if I can share it for anyone that is interested. I feel really good about my "first time" and I am super excited for Penny to start school!! We also get to go in for a visit on Tuesday so she can meet the other kids. I really can't wait for that. only 4 days to go. . .

Wednesday, April 28, 2010

Sorry I have been gone for so long. I was sucked into facebook. But I intend to disable my account come June 1 as I am going back to school and I do not want that around as a distraction. Here is my little princess. So much has been accomplished this year. She can now say a handful of words. Her favorite is "no" and she still calls me "baba" She can use about 70 signs, I wrote out a list for her preschool class and it astounded me.

Yes, she is going to school soon which is kind of why I want to get back into this thing. I was thinking that others that come after me may benefit from our experiences. Penny has been doing so great since October, no real health concerns, no roadblocks with services, that I didn't really have too much to post. But in a months time she will be in school!! Aye!

Her PPT is tomorrow. I downloaded the state of CT preschool ciriculum standards and found that she should be able to meet all those standards. She already can identify some letters and she knows colors, it is not a stretch to expect her to do so many other things during her first year of school. I know that in the fall, she will have school five days a week from 12 noon to 3:30 pm. Yikes!! I am going to miss that face so much. Well, if I have any readers around, tell me, what are YOU up to?

Thursday, November 19, 2009

On another post I will have to share my experience at the CT Down Syndrome Congress convention. But for now I want to mention that I won the door raffle and picked up several books that I am very excited about. One was "My Sister, Alicia May." For a long time, in the back of my head, I have been wanting to get a sibling with Down syndrome book for Nathaniel, but never got around to it. This book was so good it moved me to tears. Not only is the little darling girl, Alicia May, a spirited strawberry blonde like Penny, but Alicia May also had heart surgery when she was born just like Penny. I just loved the story and Nathaniel loved it too. Thank you Nancy for donating your book of poems, the book "My Sister Alicia May" and the permision to post your poem and for donating your book. I would have missed out for sure on this great read!!!

You can click on Nancy Tupper Ling's name below to link over to her website, or click on the title to link to the poem itself. I highly recommend you check it out!Our Fragile EmissaryBy: Nancy Tupper Ling

With modern screening and suchthey wonder whyyou're here, on this earthin our homeand in our arms,after all, anyonewith any sense would have resolvedthis problem of youpre-birth, pre pain.

With such stinging receptionshow we long to shelter you,surround you; keep yourgentle smiles to ourselves.Instead, we hold youup, for others to see;let you, our fragile emissaryspeak to an imperfect world.

Wednesday, November 18, 2009

Since I am no longer working behing a computer eight hours a day, I find it hard to sit down and update my blog. Actually I have been a little busy. I took the Praxis II exam for high school math teachers and I have been finishing up my admissions essay. But more importantly, I have been settling in as a stay at home mom. I actually do house work. Imagine that!! I was so spoiled by Scott. But I need to pull my own weight and do stuff so that he wants to keep me around :)

I have Halloween pictures on my facebook account. Unfortunately, after I got the photos uploaded to facebook, but before I got around to uploading them to flicker or to my external hard drive, the device that I use to connect the memory stick to the pc broke so I have to get a new one. It is only $15 a Walmart, it is just a matter of getting over there. The card slot on my pc has been broken for a while and we lost the cord that came with the camera, it is not a typical usb cable. The cost to replace our Sony cord is $80 so I would rather get that other thing. Too bad, our little princess was great!

Penny is doing all kinds of amazing things and I have to say that I love staying home with to be a part of development. She says circle (kirkle lol) and draws a round sort of thing that closely resembles a circle. She started to say "up" on Monday and yesteday I swear she said "yeah." We do a lot of coloring and work with shapes. I sort of dabbled with color recognition, but I don't know if she is ready for that. She does get really engaged with shapes though so I am going to stick witht that.

We hit a museum once sometimes twice a week since we have free admission to practically everywhere. And I still have time set aside for her naps.

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Penelope's Story

After waiting the full 40 weeks for this bundle to arrive, I finally went into labor on Memorial day, 2007. At about midnight, I called my midwife's office. I was told to wait. At 2 am my contractions felt on top of each other and I called my midwife's office again. By the time my dear husband, Scott was ready (I had my bag and Nathaniel's bag packed previously) it was 3 am. We arrived at the hospital at 3:30 after dropping Nathaniel off at my mother's house. When I was checked, it was discovered I was already at 6 centimeters! My wish was for a natural delivery so Scott worked hard at rubbing my back and making me comfortable. Oh, yeah, and I worked hard too! At 4:45 am I was ready to push! I thought this part would be quick since my first child took about 30 minutes at this stage. However, this baby decided to take her time. At 6:30 am I was still pushing and my midwife, Mary, arrived just in time for the delivery. As she was gowning up I had to stifle my urge to push for a few moments and then before I knew it, Penelope Adara Ringrose came into this world at 6:51 am! Scott cut the umbilical cord as she laid on my abdomen.

It was a surprise that I had a baby girl, and I am glad I decided not to find out the sex. Another surprise we learned at birth was that Penelope had a little something extra, as in an extra 21st chromosone. I knew the second I saw her that she had Down syndrome, but I thought I could have been wrong. Then at 7:30 am, the acting pediatrician explained to Scott and me that our daughter had a lot of characteristics of Down syndrome. I couldn't believe that on this day that was supposed to be so joyous, I was receiving what I thought at the time was such devastating news. I didn't know much about Down syndrome. Scott and I were left alone to bond with her for a little while and then she was taken away at about 9 am to be checked over. The worst news was yet to come when we learned at 10 am that they suspected cardiac issues. The neonatalogist introduced himself and advised that Penelope could not maintain her blood oxygen saturation on her own and would have to be transfered to another hospital where she would need life-saving surgery. At CCMC (Connecticut Children's Medical Center), we learned that she has tetralogy of Fallot with pulmonary atresia (she is missing the pulmonary artery).

Her first surgery was on June 4, 2007 when she was just 6 days old. The surgeon had hoped to be able to do a full repair at this time, but Penny's anatomy did not enable this to happen. The surgeon was able to put in a Blalock-Taussing (or BT) shunt which kind of gives the blood a detour to the lungs so that it has a chance to be oxygenated. After 20 days total in the hospital, Penelope came home the day before she was 3 weeks old and was able to attend her brother's pre-school graduation.

She was scheduled to have her second surgery on November 27, but during triage at CCMC, it was determined that she had a pseudoanerysm on her right groin and the surgeon did not think it was safe to proceed. The pseudolanerysm resulted from a diagnostic catheter procedure that Penny had on November 14 to see if she was ready for another surgery.

We took our chances that she would be home for Christmas and had her surgery re-scheduled for Monday, December 17 . It was an uneventful surgery except that it was longer than we anticipated. We last saw her at 7:50 am and we did not hear news until a little after 4 pm. The breathing tube was taken out at about 2 pm the next day. Wednesday, the chest tubes were supposed to come out, but a pneumo thorax was found in the chest space and perhaps, leaving the chest tubes in was a better idea. One of the three tubes was removed on Thursday and we were able to begin feeding her from a bottle. Friday, the remaining chest tubes were removed and I was able to breast feed her again! Penny was doing so well she came home the next day and was indeed home in time for Christmas.

We all love her so much and can't imagine life without our beautiful baby girl.